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Selections from an Oral History of Policy and Advocacy in Developmental Disabilities as Reflected in the Life and Works of Gunnar Dybwad Ph.D.

The Right to Education

Video courtesy of the Elizabeth M. Boggs Center on Developmental Disabilities, New Jersey's University Center for Excellence in Developmental Disabilities Education, Research, and Service.

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These videos were produced in 1988. We recognize that, while the language and terminology used were acceptable at the time, it is now disrespectful and offensive. We urge the use of "people first" language and more respectful words to describe people with disabilities in all instances, in both spoken and written language. These videos, however, are historical, and the language and terminology used has been retained throughout due to the historical context in which they were produced.

Dr. Gunnar Dybwad: In 1967, I was called back to Brandeis University to assume direction of a special doctoral program in mental retardation. And it was during that period that some people came to visit me from the Pennsylvania Association for Retarded Citizens.

I had worked with them for many, many years coming there frequently as a consultant, and I had helped them with the incredible problems which then existed in Pennsylvania where thousands of children were excluded from any school attendance because of retardation and where conditions existed in the mental retardation state institutions which one really cannot discuss in polite society, they were so bad.

Well, they came to us for help, and I knew what the situation was. They had made every effort up to several conferences with the governor himself – and some of them I attended – and with the Secretary of Welfare and with other high state officials to beg for changes to be made. They had been very active in the legislative field, testified, and, indeed, I arranged for some of my Scandinavian colleagues to actually come to Pennsylvania and testify before a legislative committee as to what could be done. And, in addition, we had some very excellent publicity, expose of conditions but nothing, nothing was helping.

And it was on that day that I said to my colleagues, "We've exhausted all these means, but there is one channel that remains open to us. We have a government that is divided into the executive, the legislative, and the judicial branch. We have never used the judicial branch. It is time to go to court."

Well, we at Brandeis that afternoon quickly found agreement with my proposal. But when the proposal was brought back to the board of the Pennsylvania Association, they said, "Well, we can't do this. We could not possibly go to court and sue the Governor, sue the Secretary of Welfare. It has taken us years to be on first name basis, this is no way to do it."

And for six months were stalemated until a very significant thing happened. It is an anecdote, but it is true; I was present. The institutional committee of the Pennsylvania Association made a report at the annual convention to the board of directors. Only to the board of directors. And the chairman of the institution committee, who happened to be a lawyer at that time, a Philadelphia lawyer, made a report on some recent incident that had led in one of the institutions to the death of a child. And by the way, a death that was not even reported to the mother. When a telegram addressed to her old address came back, nobody cared, and the mother came to visit and suddenly heard that her son had been dead for several weeks.

The lawyer in his best courtroom manner proceeded to talk about the case. We have been able to find the body of the dead boy. It was already in a medical establishment but still kept on ice. So we were able to go to court, insist on an autopsy. The attorney very quietly, very calmly in soft voice explained the damage to this boy. He had been burned apparently and so on.

And what happened was that this board of directors all of whom previously had been thinking of the secretary, of the governor, of their relationships suddenly saw that what it was all about was a little boy who had been alive and now he was dead. Why was he dead? And after that meeting the board authorized the employment of an attorney to study the possibility of a lawsuit. That was the great change. And this, you see, one has to consider when one thinks about judicial action.

Burton Blatt's exciting book Christmas in Purgatory dealt with societal issues. But when we go to court, when we ask a federal judge for help, we go to court on behalf individual plaintiff, and we ask the court to remedy injustice that happened to these individuals. And this is what led to the employment, in this case of an attorney.

It was Thomas Gilhool, who, indeed, investigated and subsequently came forth with some very good suggestions as to what the State Association for Retarded Children should do. And very wisely, he decided that we should not worry about the institution as our first step. It was too difficult for judges, for the public, for others to understand the running of an institution. He said what everybody knows is that children ought to go to school. Let's start with the denial of education for children with mental retardation. And so the famous Park case, the first case in this judicial revolution we have had in our country, that got started in Philadelphia in the federal court house. And, of course, it resulted, significantly, in a consent agreement.

Very quickly thereafter in Washington, DC, the Mills case came to the fore. And just to give you a flavor of what happened in these cases, I was asked to make a deposition and a question which the attorney for the retarded children put to me was, "Can you state an opinion as to educational sufficiency of providing only two hours of instruction per week to institutionalized adolescents labeled as dull normal and emotionally disturbed?"

And I said in answer in my deposition, "The fact that a child may have to reside in an institution does not diminish his need for schooling. To the contrary, anyone acquainted with the limitations and deprivations imposed by institutional living realizes that children in institutions need the guidance and stimulation of a full-scale education program. To provide for such children or young people two hour's instruction per week can only be compared to giving a starving child two meals a week. Two meals a week do not make a diet, and two hours of instruction per week do not make an educational program."

The Mills case was the first case which was solved with a judicial decision, not just a consent decree, and, as such, as gone down in history, as a very significant federal case.

The GCDD is funded under the provisions of P.L. 106-402. The federal law also provides funding to the Minnesota Disability Law Center,the state Protection and Advocacy System, and to the Institute on Community Integration, the state University Center for Excellence. The Minnesota network of programs works to increase the IPSII of people with developmental disabilities and families into community life.